Quote:
Originally Posted by audpod13
I was diagnosed this summer. On Decadron. What drugs are you on? Side effects from steroids worse than brain biopsy, etc....There isn't alot of info out there and this is so new to me too.Never even to this forum thing. I am a 43 yr old F. Mom of 3. Wife.
|
Hi, I saw your post while I was doing a Google search on the condition. I've been diagnosed with Idiopathic Hypertrophic Cranial Pachymeningitis for a very long time now. I had the first bout of it from 2000 to 2003, then was in remission until April 2010 and have been trying to get it under control since then. I've been on up to 80mg of Prednisone the entire time, never lower than about 30mg. I agree, the steroids are terrible, especially the long-term effects. We've tried Methotrexate, with no effect. This summer, I tried Rituxan, with great hope, but have recently found that it had no effect on the inflammation. I see my neuro again next week and we may be trying the Rituxan again with an added agent, possibly Cytoxan.
** Best of luck to you and I hope to hear from you soon.
Wendy
